posted
I am 51 years old and recently been diagnosed with task specific leg dystonia. I've been put on 75mlg amitriptyline which is down to 50mlg now since 2 months; I live in Paris and I have to walk to catch the metro or bus (not only do i organize walking tours but i give cooking classes so i need to walk and/or stand for my work)which is getting more and more difficult especially when it rains and in winter even the walking stick does not help! My legs, back and even facial muscles start to hurt when i walk more than a hundred yards. I've been told that i walk like a 'horse'as my right leg curls upwards and then comes down with a flop! My walking pace has been reduced by half. Since this is a rare disorder i look forward to some support from people like me similar.Here in Paris only a handful of cases been reported.
-------------------- PC Posts: 2 | From: Paris | Registered: Oct 2009
| IP: Logged
posted
This caught my eye because of the way you described task specific leg dystonia and the connection to it being more difficult in the rain and winter. For me walking in rain is like ice and ice and snow is just not even on my radar anymore.
I would suggest that you get check for Dopa-Responsive Dystonia (DRD). I have walking, balance, coordination problems and taking a Dopamine drug called Sinement helps tremendously. Unfortunately DRD is a diagnosis of exclusion but often not on many Neurologist radar as it is pretty rare and most Neurologist have never seen a patient with DRD let alone diagnosed one.
Often the easiest way to determine if it will help is a trail of the medication, one a day and increasing the dose slowly over a few months. I notices the best affect at 3 times a day. Taking One I felt the effect but really started to notice a difference at two and three was even better.
Sinement does not help me completely but I definitely notice how much it does help if I miss a dose during the date. I take Sinement 25/100, 3 times a day.
Just a thought, I was diagnosed at 42 years old when my symptoms had progressed over the 5 or so years before my actual diagnosis.
posted
I have already met with many neurologists and now i'm with a team of movement disorder specialists who will be monitoring me;my next appointment is in February 2010. Here is short video on my walk...let me know if you know anyone else who walks like tha. In the beginning i walk well and then i slow down: youtube.com/watch?v=kTzJwRkgdTI
[ November 02, 2009, 04:43 PM: Message edited by: Lori at WE MOVE ]
-------------------- PC Posts: 2 | From: Paris | Registered: Oct 2009
| IP: Logged
posted
The video is interesting. You seem to have the opposite of a foot drop. I will say this. I had a foot drop that was mad better when I got my spine fusion surgery for a herniated disc at C6 & C7.
They probably are looking at your spine carefully as well but if you have not had an MRI of your entire spine it would be worth it to make sure. I think my Dr's were surprised as well that the spinal fusion made my foot drop better.
posted
I have a task specific dystonia that has affected my walk and standing, but mine is in my trunk, so my walk is different from yours. I also found that at the beginning of my walk it could be OK and then get progressively worse the farther I went.
I am 54. It started 3 years ago, and for some unexplained reason, it has gotten gradually better. At it's worst, I had trouble walking around my house. Now it only causes problems if I go for a really long walk. I have no idea if any of the things I have done have actually helped, but for what it's worth:
I take 1000 units Vit D plus Calcium/Magnesium supplements. I swim 3 times a week. I make sure to rest when I am tired, and not push things. When the dystonia gets worse, I take it as a message to slow down. I got a stool to sit on when I am cooking (could you do that for your cooking classes?), although I don't need it anymore. At it's worse, I needed a "scooter" to get around if I wanted to go any distance, but it has been gathering dust in my garage for the last year.
The Sinemet is definately worth a try. If the doctors don't suggest it, you should ask them. It didn't work for me, but apparently when it does work it can be dramatic.
I hope you find something that works for you
Hunched
Posts: 21 | From: nova scotia, canada | Registered: Feb 2007
| IP: Logged
posted
Please Note: Direct linkage to commercial sites (typically .com or .net) is not permitted from the WE MOVE web site.
WE MOVE is a not-for-profit organization that strictly adheres to the HON code for healthcare organizations on the Web. For more information about this code, go to http://www.hon.ch/HONcode/Conduct.html.
If WE MOVE was to link to a .com from our discussion fourms, an intervening screen would need to tell the visitor that they are leaving a non-profit site and entering a different commercial web site. Unfortunately, we are not able to add these intervening screens from the WE MOVE Discussion Forum; therefore, active and direct linkage to commercial sites is not permitted.
If you wish to share the URL of a commercial web site, you may do this through one-on-one e-mails or a text listing (not active) of the link within the WE MOVE discussion forums.
Example: Having www.wemove.org would not be allowed, but if it was listed as “wemove.org” - that would be allowed
Posts: 454 | Registered: Mar 2006
| IP: Logged
Printer-friendly view of this topic